Clinical Trial E5103

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    Desi,

    Did the massage help your lymphedema?  I found that the PT helped mine.  I have started resistance trng and wt training (not heavy wts).  I have not had the heaviness in my arm that I had been dealing w/for months.  I'm glad to hear everything else on your GI tests were normal.  I think we all have gone thru a lot!

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    DebK,

    Congrats on your last TAXOL! What a happy day.  Maybe go for a massage after?  Go ahead and treat yourself you well deserve it.

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  • Janet0527
    Janet0527 Member Posts: 141
    edited March 2009

    Hi Ladies - I haven't been on the boards for a few days, but thought I'd check in.  I was thrilled today to find out that I can get Emend for no charge through the ACT program.  I have good health insurance, but no prescription coverage - it's about $100 a pill, so I was thinking of either ordering from Canada (where it's about $30 a pill) or going without it and hoping for the best - I have it prescribed for days 2 & 3 (I'll get by IV on treatment day) during the AC, so that's 8 pills.  Phew, that's a relief.  My first treatment is Wednesday, and honestly I'm ready to just get started and see how it all goes. 

    Deb - Congrats on wrapping up treatment!

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited March 2009

    Janet:

    Good luck with the first tx. I used the Emend, and really didn't have much nausea. Would occasionally follow it Ativan or Reglan. My insurance would only cover every 17 days, but I needed it every 14 days--they finally came around with a special request from my onc. Why does it have to be so hard!

    kim

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  • Keryl
    Keryl Member Posts: 230
    edited March 2009

    I have still been going to PT for the lymph massage and other stretching. I have one more week of radiation. My skin is doing ok - one spot is raw, but overall ok. Big news is that my avastin and taxol SEs are finally starting to subside, but it has been over 45 days.  Sinus is MUCH better but still shows up some days.... much less imposing though.   Has anyone had taste issues come back later - I did not have them weeks ago and now they are back!  and I am outside treatment by over a month - wondering if it is still in my system?

    Anyway, I will be going through that "no more treatment" syndrome shortly - feeling a bit apprehensive. Though time to lose the 18 lbs Ive gained! 

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  • moborn63
    moborn63 Member Posts: 70
    edited March 2009

    Hi Brena, Yes other members of my family have died from Cancer, My father from bone, my brother from bone, his twin from colon, my older sister from both breast and brain and a cousin from liver.

    We know it geneic and have all been getting tested. My twin Rebecca had the test done and it was confirmed that our family has the BRCA mutant gener {LOL our doctors were excited due to the history of our immediate family with two sets of twins getting cancer and other immediate family. It a scienticfic dream for them is what I told my doctor. It made him laugh} . My sister found a lump and had a check done. She told me about her result but I had already scheduled a mamagram because I to felt a lump. Hers was found on her right side mine was found on the left. We were diagnoised within a week of each other. We have different doctors so our treatments are different. I had the surgury first and have now started Chemo and then I will have radiation. Whereas she had the Chemo first and since she has completed it she will now have the surgey then raditation. Her mass was  2cm whereas mine was 5. both were stage III. My family is very supportive as you can tell we have been through this before. Hopefully with the advances in medicine today both Rebecca and I will survive we have lost so many family member in the last 5 years already from the big C.  There were 11 of us kids and there are only 6 of us left.

    Thanks for you thoughts

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  • brena
    brena Member Posts: 458
    edited March 2009

    Desi,

    Glad to hear from you was actually thinking about you and havn't seen you in a while. My breast was swollen, red and lots of pain. I was given an antibiotic (of course) which didn't help then  tried my own remedies which also did not work. Decided it needed professional help so found a PT who specializes in Lymphedemia, she is great and making leaps and bounds toward a normal breast. She is very pleased with my progress and I should be done in two more weeks, based on current progress. I have edema in the breast as my arm is not affected at all, PT said it would of been if I had waited much longer. PT said I may have flair-ups in the future so she told me what to look for and how to help myself and at what point I would need to be reevaluated. PT is going to see if insurance will pay for a pad that I wear at night to help encourage breast drainage, not a big deal to wear and does help.

    Please seek professional help, don't wait to long.

    take care and keep us posted on your progress,

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  • brena
    brena Member Posts: 458
    edited March 2009

    Debk,

    You are the one, FANTASTIC!!! knew you would do itWink Take Carolyn' s suggestion and treat yourself to something extra special. My vision...wine in the left hand with chocolate in the right while sitting in a hot tub full of bubbles!!

    your amazing,

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  • brena
    brena Member Posts: 458
    edited March 2009

    Keryl & Desi,

    Have you considered joining us on the BC cruise?

    wishing you a smooth road to normalcy........when u find it draw us a map

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  • brendafromflorida
    brendafromflorida Member Posts: 90
    edited March 2009

    Desi, thanks for the tips.  I will check with my onc on Thursday about the mouthwash.  I did get the Neulasta shot after my A/C treatments.  He did order Neupogen now during Taxol.  I will give myself this shot on the 3 days following each treatment.  Yell   I am hoping that helps.   Here's hoping all my counts are acceptable to resume treatment on Thursday.   Thinking this is extended even one more week freaks me out.  

    Positive thoughts to everyone.   We will all soon be finished with this.   I am still trying to decide what my reward to myself will be.  You can bet it will be something spectacular!

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  • PinkVelvet
    PinkVelvet Member Posts: 64
    edited March 2009

    Hello Everyone,

    I haven't been around much but I've missed everyone and thought I'd come back.  

    After I finished chemo in 11/08 I got sick and it took a while to recover.  I'm now back at work full time and am enjoying my short hair style.  I am still sore and I ache, feeling like an old woman a lot but I am thankful about each day and all the blessings I have in life.

    I was having trouble emotionally after I finished treatment because I didn't know what to expect and my life was no longer structured by Dr. appointments and treatments.  That part is better now too. 

    I went through a bad period recently after I heard that a local woman died from breast cancer.  Her story was in the local paper because she was diagnosed with BC while she was pregnant, which was about the same time that I was diagnosed.  She went through chemo, and there were updates on her periodically, such as when she had her healthy and beautiful baby girl.  I was totally shocked and stunned to hear of her death because it happened so quickly.  I've always believed that if my cancer came back or spread, I would have a lot of time. I guess it doesn't work that way for everyone. 

    After some intense stress and worry (I was sure that I would be dead within a week) I'm doing okay again.  Her experience has helped me remember that I need to enjoy every moment, every day and that for me, staying connected to friends and family is what life is about.  I've gotten the best medical care that I can and whatever happens will happen so I don't need to worry about it.  If this dreaded disease has given me a 'gift' at all, I would say that it's helped me really enjoy the moment and most often, I'm happier than I ever was before BC.

    I hope the chemo goes quickly for everyone.  It really does end.

    Take care,

    Jen 

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  • debk55
    debk55 Member Posts: 108
    edited March 2009

    Hi All,

    Well I am done with the Taxol but, I did not get the last tx due to neuropathy in my hands and one of my blood counts being down the onc said that 11 taxols was enough and he did not want to cause permanent damage to the nerves.  Monday AM I was packing my daughters lunch and thought I had a hold of a plate and it dropped right out of my hand when I was taking it out of the refrig.  My fingers are all numb to the first joint and tingling to my wrists and the bottom of my feet are tingling too. 

    I was kinda of worried about not getting the last taxol but, I have to trust my onc he is really a great DR and really smart. So I have been just kind of in shock that it is done.  I am really tired and can't wait for some of these SE to go away.

    Brena, The chocolate and wine and hot bath sound great except I can't taste them right now so will have to wait till they taste better. 

    Carolyn, But, a massage does sound good I will have to think about that. I had not even thought about rewarding myself  just have been thinking about wanting to get back to normal life (whatever that might be??). But, I will have to think seriously about the massage. 

    Thanks ladies for all the wonderful support.

    Janet, My onc had me take the emend 1 hour before tx and on days 2-3 and I did not get much nausea as long as I did not try to do much, I was just very tired. I slept alot!!!!!!  Good luck :)

    Blessing to you all and to all SE free days,    Deb:) 

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  • Keryl
    Keryl Member Posts: 230
    edited March 2009

    Hi all - I have my last rads tomorrow. I wish I was going on a cruise, but I am going to a beach house in MIssion Viejo - for the week. I may just stare at the ocean for the full week.

    Yesterday a little old man in onco dept said to me -- how ya doing? I said, pretty good. He said, well, at least you are above ground. I said, Yep. He said, well no one is getting out alive, with or without cancer ....I was a little stunned and said, uh ok.   later that day I thought, nothing is forever and can be gone in an instant ....so you are so right about appreciating every day and not focusing on the uncontrollables, the what ifs, or the bad news.  

    Deb - GET THE MASSAGE. 

    Hang in there all. I think I might cry tomorrow as the end of a major leg of my journey and set free only for more unknowns, as PinkVelvet explains the "afterlife" is worrying me a little as I start the reoccurance clock. Any other thoughts out there on how to handle?

    Also, while this originated as the Avastin thread - I have had more people look at me funny when I said I was in an avastin trial. I guess since it is known as pretty serious stuff. whats with that?

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  • Janet0527
    Janet0527 Member Posts: 141
    edited March 2009

    Well I had my first AC last Wednesday, and I was pleasantly surprised to feel pretty much normal all the way through today (Day 4), but things are changing.  I worked Thursday and Friday, and despite a little fatigue I dragged myself out salsa dancing last night, thinking it would be better for me to get out and be active physically than to lay on the couch.  It was fun, and today I did a mid-day ballroom practice, then I came home and pretty much slept off and on for the last 9 hours, and now after a brief awake time, I'm going to sleep for the night.  I had intended to start my taxes, but I guess mind over matter only goes so far.  Keryl - What sort of comments are you getting about the Avastin?  Maybe it's just the fact that you're in a trial, which by definition means the Avastin isn't standard of care, rather than anything particularly threatening about the drug.  My impression was that the Adriamycin is nastier stuff than Avastin in terms of risks, and Taxol is nastier in terms of possible SEs, but maybe I missed something.

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited March 2009

    Janet--Good to hear your first AC went well.  I had #5 of the 12 Taxols this past Friday, and I did ok through the AC. It seemed like I had different reactions to each AC--but nothing too terrible. I did get very tired near the end, and my white blood cell count went way down. So, listen to your body and take it easy when you need to. I think exercise is good--I tried to walk as much as possible, and I think it helped. Couldn't do it every day but most days.

    Good luck with your next tx.

    kim

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  • Janet0527
    Janet0527 Member Posts: 141
    edited March 2009

    The extreme fatigue monster has taken up residence in my body, but I refuse to give up this easily.  It's only Day 5 of Round 1, so there is no way I'm accepting this as my new normal this early in the game.  I must keep moving, so I am off the couch and heading to a salsa party.  When I have to wake up at 5:30am to go to work, I may regret this decision, but at the moment, it seems oh so very wise.

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  • moborn63
    moborn63 Member Posts: 70
    edited March 2009

    okay ladies I have had my second chemo treatment. Now the hair is starting to fall out. I laughed at myself today because the only thing I thought was that it took me 45 years to grow this hair and only a few weeks to lose it. But hey it only hair. Now my twin sister can call me cue-ball when I get the rest shaved off. Like I called her when she lost her hair a couple of months ago due to chemo. I found an old picture of us together as 7 month old babies sitting in our pumpkin seat as bald as all get out. And I told her today. Wow we are going to look like twins again. She laughed and laughed. She has an appointment coming up soon with her surgeon to schedule her mastectomy. Hope all goes well.

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  • moborn63
    moborn63 Member Posts: 70
    edited March 2009

    The picture in my profile is of me and my twin sister Rebecca. We are both going through BC together. She is the one one the left and I am the one on the Right. I am older by 25 minutes. LOL she hates that.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited March 2009

    Hi everyone.  I will be having surgery in about 7 hours.  Obviously Im kind of anxious since Im still awake. 

    Think good thoughts for me today.

    Ill report in when I get home in a couple days

    Teresa

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    Hi Teresa,

    I am sending good vibes your way for a speedy recovery.  I will also send some Hawaiian sunshine your way.

    Carolyn

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    moborn63,

    I am sorry you had to join us but am glad that you found us.  It sounds like you've gone thru a lot w/the "C" with your family history.  This site is great for information.  It has been a godsend for me.  I am enjoying life and moving on.  If you have any questions about any of the chemo treatments I'm sure you will get plenty of answers here. Well, got to meet the ladies at the pool! 

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  • ryjuem
    ryjuem Member Posts: 64
    edited March 2009

    anyone notice that the avastin is making the hair grow back in painfully slow??

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  • brena
    brena Member Posts: 458
    edited March 2009

    Teresa,

    Let us know how you are doing, thinking about youSmile

    think cruise

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  • brena
    brena Member Posts: 458
    edited March 2009

    Joanne,

    I think Carolyn's hair grew like weeds? I have been done chemo since may of 08 and just had my 1st professional hair cut two weeks ago. Maybe our dna makeup is the influencer? I may keep mine short but not the current short-short.

    looking good 

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  • brena
    brena Member Posts: 458
    edited March 2009

    Jen,

    Sure wish you had stopped in a little sooner, a few of us had been feeling the same way as you. "I know it will take time" and with behaviour change I will keep moving forward and if one more person tells me that same quote I may just hit them. I am making a slow progress toward a new normal, will never expect to experience the same old normal.

    I am removing my cancer magazines from the threshold and living room and replaced with travel magazines (I enjoy.) Rearranging the house, staying away a little longer from cancer websites and holding conversations that don't include the "C" word. I want to keep up on the news and technology but don't want and refuse to let it consume my life. The further I get from treatment the better I feel, it will be 1yr since last chemo in mid May 09. Time is rolling past, I don't even want to start thinking about milestones such as years since dx. I know I will just set myself up for disappointement if I get a recurrence, the possibility will always be present but how I handle it is my choice. The only Doc I am continuing to visit is my Onc, so my reminder is only once every three months and that is plenty for me. The arrival of warm weather is also a WONDERFUL distraction and getting to meet Carolyn and Teresa in a few weeks with be the ultimate. So I do understand your feelings and you are entitled to every one of them......damn it you earned them. So find your way of getting back on track and don't beat yourself up if you take a step back. We will be here for you with every step.

     take care of yourself,

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    Joanne,

    Brena is correct.  My hair actually started growing in week 7 of Taxol (had my last Taxol at the end of May 08).  My hair is to my shoulders but w/a layered cut (natural layering since I have not had a haircut).  It's also wicked curly in back.  People ask me how i get it that way which is a short but long story.  My hair did come back quite gray.  Color fixes that sometimes.  My hair did not take color very well w/a new color product but I think its the hair shaft that is still filled w/chemo junk. (I had professional stylist from Newbury St in Boston do my hair).  Remember that hair grows faster in the summer than winter...

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    Keryl,

    Congrats on your last Rad!  Doesn't it feel wonderful.  I am glad you are taking time for yourself.  Doing nothing can help w/relaxing ones mind and body and even spirit!  Do something for yourself.

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  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    Bettylou,

    Where are you?  Just cking to see how things are going.  You haven't posted in a while and just making sure your doing fine which I am sure you are. 

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  • brena
    brena Member Posts: 458
    edited April 2009

    Carolyn & Teresa,

    Sent you both a pm.

    take care,

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  • debk55
    debk55 Member Posts: 108
    edited April 2009

    Hi All,

    Brena, Carolyn & Teresa when is your cruise???  Soon I think.  Have fun !!!!!!!!!!! And enjoy the sunshine I will be there in spirit with you guys:)   Wish I could really be there but, no work for 6-7 months put a cramp in our budget. 

    I have not been happy this week!  I was supposed to have my Avastin on monday 3-30 and the trial nurse called friday and said I could not do chemo on monday until I had the echo & ekg. The onc office had booked my echo for 4-1 and chemo on 3-30 So they got the appt changed around, the echo for  3-31 and the chemo & onc appt on 4-1 who I have never seen (as my onc did not have any appts on such short notice)   I really wanted to see my onc as I won't see him again for 3 months.  And I have been trying to get my chemo appts on a certain day to be with this woman I had made friends with and she is doing a herceptin trial and has to continue for months also. I thought it would be nice to have something to look forward when I go there. Her trial is every 3 wks also so it would work out.  So I saw the new onc and he was very nice tha went well. I had about 1 1/2 hours to wait for my chemo appt so my sister and I went to lunch and when we got back the trial nurse came up to my and told me that the trial drug did not get there and I could not get my treatment after all and the drug would not be there til 4-7,  I was really upset. I drive 1 1/2 hours to get to this hospital and it is SUPPOSED  to be very good, I had seen a different Dr than I  had too and that also meant that it would be months before I could get my friends and my chemo treatments together.  On the trial the Drs can change your appts by weeks ( if they do not have the drugs or your blod work is bad) but, the patient can only move them by 2 days and now I was about 10 off from her appt time.    ANd I was looking forward to not going back to have a treatment for 3 wks!!!!!     I must have looked really disappointed because my trial nurse called yesterday and he had talked to my regular onc and said I could wait and have my chemo tx on 4-17 (that would be when my friend is having hers) as the Avastin has a long half life and waiting another week would be fine. So finally it worked out that I can wait a couple weeks before I have to get a tx and I can go with my friend but, I was upset and dissapionted. I guess I am just getting tired of all the stuff and do not have the patience for screw ups!!!   

    Sorry for the rant but I thought you guys might understand & thanks for listening. 

    Teresa,  How are you???   Hope you will be fine for your trip:):)

    Moborn, How are you???  Is your hair all gone now??  That was very upseting to me I hope you are doing ok.  Get some nice head covers. I went to walmart and got lots of different color bandanas. Have you got a wig yet??  I had I hard time the right one but, I kept calling the different places the ACS would give and I found one that is pretty nice for nothing!!!  I also got very tired on the AC how are you doing??   Keep in touch. 

    Bye for now Deb:)

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